Parenthood
Family make decision to travel the world for 1 year before their children go blind
The family may look perfect but three of their four kids have a rare disease.
Cherie Gozon
10.13.22

Meet the Lemay’s

Sebastien Pelletier and Edith Lemay look like a happy couple without any trouble. Together, they raised four children named Mia (11), Leo (9), Colin (7), and Laurent (5). You can’t help but smile at this picture-perfect family.


But those smiles have been through heartbreaks and tears. It was quite a struggle for Sebastien and Edith at the beginning, more so for their children. In 2019, doctors told the couple that three of their kids (except Leo) were diagnosed with a rare genetic disorder called retinitis pigmentosa.

What is Retinitis Pigmentosa?

According to FightingBlindness.org, retinitis pigmentosa (RP) is a rare inherited disease that causes retina degeneration, which would further decline in vision. It affects the rod and cone photoreceptors of our eyes which are responsible for converting light and how our brain interprets it as vision.

Unsplash - Salvatore Ventura
Source:
Unsplash - Salvatore Ventura

People with RP would first notice a slight decline in their peripheral and night vision. As the disease progresses, a person with RP would soon loses color perception, visual acuity, and central vision.

This means that Mia, Colin, and Laurent will soon lose their sense of sight.

Visual Memories

Sebastien and Edith were devastated when they knew of their children’s condition. But a parent’s love would do what’s best for their kids. They asked specialists how they could ensure their kids won’t miss out so much.

YouTube Screenshot - BBC News
Source:
YouTube Screenshot - BBC News

She said it’s best to fill their children with visual memories like picture books. However, Edith thought of something better – and Sebastien agreed. They would make visual memories together as a family the best way they know how.

Around the World in 365 Days

Sebastien and Edith decided to pack their bags and go around the world for a year. They want their kids to have real-life visual memories of places and experiences. Edith believed these would be nice souvenirs that the kids could look back on should they lose their vision.

They started their journey in Namibia. The family had no itinerary; they just went with the flow. So far, they’ve been to six countries on three continents: Africa, Turkey, Mongolia, and Indonesia.

Learning Resilience

Sebastien decided that it was best to live meagerly while they were traveling. No fancy hotels or car rentals whatsoever. They wanted their children to experience life as it is. There were places with no water and electricity, but they wanted to teach their kids one thing: resilience.

YouTube Screenshot - BBC News
Source:
YouTube Screenshot - BBC News

“They’re going to need resilience to adapt as their vision changes, and that’s what traveling helps teach you,” Edith told People in an interview.

YouTube Screenshot - BBC News
Source:
YouTube Screenshot - BBC News

“They’re learning that any situation, no matter how difficult, can eventually get better if you focus on finding a solution,” she added.

A Blurry Future

The effects of RP have already started to affect their vision. According to Edith, all three children with RP already struggled with their night vision. The moment it gets dark, they can’t see anything at all.

YouTube Screenshot - BBC News
Source:
YouTube Screenshot - BBC News

Sadly, there is still no known cure or solution for this genetic disorder. Sebastien and Edith are only hoping that this odyssey they are currently in will be something the kids will remember and appreciate.

Watch the video and see how this family is making these visual memories together.

By Cherie Gozon
hi@sbly.com
Cherie Gozon is a contributor at SBLY Media.
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